Awkward Auntie Question No. 11

woman at beach

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Question: My tolerance for sex and/intimacy (never strong) has nearly disappeared. How do I recover this connection with my husband?  I don’t have cancer but have had a BSO in the past 6mos, am BRCA+, and have had ongoing elevated numbers. I am also on HRT. (Previvor)

Awkward Auntie: This is a common issue in part due to the loss of ovarian hormones that leads to early menopause that is way worse than ‘normal’ menopause. You have been through a LOT in the recent past along with the knowledge that you are at high risk due to your BRCA + status – libido is a head thing and stress and worry will often take away desire. You don’t mention if the hormone therapy you are taking is local or systemic….. is vulvo-vaginal dryness adding to your lack of interest.

When you say that your tolerance is low or non-existent, are you talking about pain with sexual touch or activity or loss of interest? These are two separate but connected issues. Talking to a sexuality counselor can also help – your partner is likely deeply affected by what you have been through.

One way to increase desire that has good results is the practice of mindfulness – there is a new book that has just been published that I highly recommend. Get a copy and read through it – no pills or potions, just using your head to help!

Better Sex through Mindfulness: How Women Can Cultivate Desire by Dr. Lori Brotto (Greystone Books)

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

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More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Awkward Auntie Question No. 10

woman on beach

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Question: My Libido is all over the place. Is there anything I can do to make it more consistent? Sometimes dryness is a problem, which I use lubricants. Other times I am too sensitive. I also want to know if there is something to help with sensitivity. I can’t take estrogen because that will mess everything else up. (Female, Papillary Thyroid survivor)

Awkward Auntie: I’m not quite sure what you mean by ‘all over the place’ but because you also say you would like it to be more consistent, I am going along the path that sometimes you are interested in sex and sometimes not. On the one hand, this is a common experience for many women due to hormonal changes in their menstrual cycle with libido often peaking just before ovulation, Mother Nature wants to potentiate our ability to get pregnant! On the other hand, libido is not merely hormonal and is affected by other more social factors such as stress, fatigue, how we feel about our self and our partner. The dryness and sensitivity you mention can also cause a decrease in libido – if sex or sexual touch hurts, libido drops because we are (usually) aversive to pain.

Using a lube is great – just make sure that it does not contain a whole lot of ingredients that cause irritation – colors, flavors, anything warming or cooling or intensifying. Many lubricants contain glycerin and alcohol and these can cause problems by altering the normal pH of the vagina. The simpler the better and often a silicone lubricant is the best – look for ‘-cone’ at the end of the word (should be just one word) in the list of ingredients.

If you haven’t seen an endocrinologist as part of your treatment/recovery I would strongly recommend that you do so. These experts in hormonal issues usually know more about the topic than oncologists and will give you the best evidence-based suggestion for managing life (and hormones) after thyroid cancer.

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

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More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

How To Navigate Being Single And Infertile

a smiling cancer surviovr

Megs is a strong and courageous warrior who has shared several of her stories with us.  This is a segment of one of her latest pieces where she discusses navigating being single and infertile after young adult cancer.

…I never had the discussion nor was counseled about fertility preservation. What is a single 39-year-old with no prospects supposed to do when the oncologist says you need 16 rounds of chemo and then asks if you want to freeze your eggs in the same breath?

For me, I felt an insane amount of pressure and fear because I just wanted the cancer out of me. Once I was told I needed chemo asap because my tumor was growing aggressively, I couldn’t focus on anything else. How could I even think about freezing my eggs when I didn’t know if I was going to live or die?…

You can read the rest of her beautiful piece here.

Infertility

infertility after young adult cancer

I saw the cutest little boy at Target, maybe he was two or something, wearing the most darling sweater vest and bowtie. I couldn’t stop looking at him. Before I knew it, I was crying; just silent tears rolling down my cheeks. It was a punch in the gut because cancer took away my option to have my own child.

Yes, I know there are many children who need a home and could foster or adopt. I actually want to smack people when they make that insensitive comment. Why can’t they see how much it hurts me to know I’ll never have someone who favors me or inherits my talent?

What is my legacy?

I somehow ended up in the children’s section while at Target. I couldn’t stop the torture. Every tutu, dress, bowtie and little shoes caused a tear and my breath to catch in my throat.

It’s funny that I think about children at least once a day. I had convinced myself pre-cancer that I would never have any and didn’t want any. They are too expensive. What if they are premature like I was and filled with health problems? Plus, I’m single, so end of story.

Yet, when my oncologist and gynecologist said it’s best to have a hysterectomy and bilateral salpingo oophorectomy to lower my chances of a breast cancer recurrence since my body suffered such horrible sided effects from all the post treatment for pre-menopausal women, my heart stopped. The final step was to medically induce me into menopause many, many years early and hope my body will respond well to the post treatment for menopausal women. Plus, the surgery would completely prevent me getting cervical, ovarian, uterine cancer and endometriosis. Sigh.

I collapsed into tears. Do I want to live or die? Thanks to cancer, my insides are already dead.

by Megan-Claire Chase

How would you respond to the writing prompt, Reproductive Endocrinology & Infertility?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Winter 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

Finding Love in the Face of Cancer

love after having young adult cancer

Lara is a delightful young woman who has shared some of her stories with us on the Young Adult Voices blog.  Recently she wrote a fabulous article about her journey finding love after having young adult cancer.

“The day after I was diagnosed with breast cancer, I remember sitting in my room and sobbing.

I was sobbing for the love that I had never experienced.

The partner I would never meet.

Love so deep and beautiful.

The kind you see in movies and dream of.

I will never find that because I will most probably be dead in a year.”

She goes on to describe a beautiful love story that is authentic and real and raw.

You can read the rest of the article here.

Awkward Auntie Question No. 9

reconstructed breasts after young adult cancer

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Question: How carefully do reconstructed breasts need to be handled? My husband and I are going to be getting back into having sex in the new year and I would like to have a medical professional’s opinion on the potential risk of damaging the newly grafted fat. Is everything fair game once I’m allowed to sleep on my stomach again? Are breasts reconstructed from my own tissue safe to handle like original breasts? What about various types of implants (just in case others have the same naive question I do but had different reconstruction)?

I’m 38 and had stage 2 invasive ductal carcinoma in one breast; no chemotherapy (no spread to lymph nodes), no radiation (bilateral mastectomy); I’m on tamoxifen; I had a total hysterectomy and salpingectomy but still have both ovaries. I had a bilateral mastectomy and insertion of tissue expanders, removal of the expanders and DIEP flap reconstruction (I no longer have any kind of implant), and finally fat grafting and revision (removal of the grafted skin patches, and the dog ears on the abdominal incision). One month after the revision surgery, I was applying silicone lotion to the scars as instructed and the skin at the end of my abdominal scar opened up and my finger went into my side; it’s been stitched up again but this made me nervous about the strength of my pieced-together skin and tissue. I feel ridiculous asking my surgeon about how touchable my new boobs are though.

Awkward Auntie: You have really done it all – or had all done to you! And it must have been quite shocking to find your finger under your skin – but that was in the early stages of healing (one month later) and in general terms, we say that full healing takes at least 6 weeks. You don’t say how long ago your surgery was….. but if you are allowed to sleep on your stomach again, then you should be fine to include breast play in your sexual repertoire. Remember that it is YOUR tissue that has been used to create your new breasts and over time (and it can take a long time), your breasts should regain some sensitivity…. some women report that they feel ‘electric shocks’ in their reconstructed breasts for YEARS after the surgery. Altered sensation can be scary for women who have been treated for breast cancer because they usually panic and think that what they are feeling is related to cancer coming back. I would suggest starting off with gentle breast play and it is important to tell your partner what YOU feel and what feels good – and not good. Heavy pressure may not be comfortable for a while….or ever.

Women who have had implants are often instructed to massage their breasts using quite a lot of pressure to reduce the build-up of scar tissue.

In answering this question I searched the medical and plastic surgery literature to see if this has been studied or if there are any websites with specific information about this – and I came up empty handed! It is a real pity that you feel that you can’t ask the surgeon about this – he/she should be talking about this routinely with their patients because if you have a question, it is a pretty good bet that most women would want to know this too!

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

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More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  Are you a young adult cancer survivor?  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Awkward Auntie Question No. 8

Dr. Anne Katz

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Q: I’ve recently become sexually active again (I’m 2 years post-treatment) and have been experiencing bleeding during/post-sex. I use lubricant, but I’m wondering if this is a problem for anyone else? I’m going to make an appointment with my gyno, but I’m just concerned. Last time I went in, I was told I wasn’t menopausal yet (though my AMH levels were a bit low). I’m only 23 and this has been very frustrating. The bleeding is spotting because it’s not continuous but it’s initially more than I would typically expect and sometimes continues to spot for a while after. And sometimes there’s pain but not sharp pain, just like soreness?

Awkward Auntie: Firstly, you need to see a GYN and preferably one who has experience with cancer survivors. There could be any number of reasons for the bleeding during and after sex; small tears could be occurring due to friction during penetration and this is causing the spotting and pain. Because you had a stem cell transplant you may have some changes due to graft vs. host disease (GVH) – this is why I am suggesting that you see a GYN who knows about cancer as a ‘regular’ GYN may not recognize the GVH. It’s also possible that lack of estrogen may be causing the vaginal tissue to be easily torn. You did not state whether you are still getting periods etc and we often see early signs of menopause (scary at your age I know) in young women who have undergone stem cell transplantation due to the effects of the conditioning regimen on the ovaries.

Secondly, not all lubricants are created equally – and you may need a more ‘cushiony’ type. Water-based lubricants can dry out quite quickly and a silicone based lube may be better for you. I would try one of these and see if you like it and if it works better. But a visit to a GYN is essential!

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

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More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Awkward Auntie Question No. 7

vaginal dryness after a hysterectomy

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Q: I’m a 36 yr old stage 4 colon cancer female.  I’ve had a complete hysterectomy and suffer from vaginal dryness now. Is there anything I can do to permanently restore my body’s natural lubrication?

Awkward Auntie: Vaginal dryness – as well as vulvar dryness – is very common after removal of the ovaries. Because you had colon cancer that is not hormonally driven, you can use some local estrogen to help restore the tissues. You could also use hormone therapy in a systemic form (such as pills) that would address some of the other side effects of life after menopause such as hot flashes if you have those. There are different kinds of local estrogen including a small tablet that is inserted into the vagina, a silastic ring that is inserted into the vagina, or progesterone cream that is inserted into the vagina. Your primary care provider or GYN should be willing to prescribe these for you – and if there is reluctance, perhaps your oncologist can do some education with them. It would also be important for you to use lubricant for any and all sexual touch/play and of course for penetrative intercourse.

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

—

More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Awkward Auntie Question No. 6

sex after a cystectomy

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Q: I am a 36-year-old male cancer patient with bladder cancer. I’m told one of the possible outcomes of a radical cystectomy is being unable to have sex. How possible is this, and how does one talk about or learn to live with being that kind of disabled?

Awkward Auntie: Unfortunately the treatment for advanced bladder cancer is aggressive and causes significant erectile problems. I certainly hope that you have been told about these as part of the informed consent process before surgery. There are different approaches to radical surgery and so it is difficult for me to accurately predict what challenges you may have to face after the surgery. What I can tell you however is that while you may experience erectile problems and may not longer have any ejaculate, that does not mean the end of your sex life. Depending on how creative you want to be, the end of penetrative intercourse does not mean the end of an enjoyable sex life. You should still be able to have an orgasm with genital stimulation and with good pelvic floor muscle control, your orgasms may even be more intense. You can still give pleasure to your partner with your hands and/or mouth. Using a vibrator – externally – for you can be an intensely pleasurable experience as well as something you can also use with your partner. I strongly urge you to talk honestly with the surgeon doing the cystectomy to find out exactly what you might face after the operation…. and you should get the answers you deserve.

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

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More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.

Awkward Auntie Question No. 5

libido after young adult cancer

Ever had a question about relationships or sex that you just can’t ask your oncology care provider?  Ever felt too shy to ask a nurse or doctor a question but really need the answer?  Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie!

Q: I have zero sex drive. None. My only desire to do it is so that my poor long-suffering partner isn’t doomed to a sex-free existence. How do I build this into my routine again? For a long time the act itself was very painful, now its less so but I just feel uncomfortable and unengaged.

Awkward Auntie: This is a common question; loss of desire (also called libido) is the most common complaint I hear in my therapy practice. Desire is a delicate thing and particularly in women, can be lost (and gained) with the slightest change in how we see ourselves, our relationship, if we’ve had a stressful day etc. It is VERY common for women who have gone through the kind of treatment you had to lose interest, and feel bad about it.

Our thinking about female desire has changed over the last 10 years or so. We used to assume that women, like men, should or do have feelings of desire all the time, what we call spontaneous desire…. but our more current thinking is that for many women, desire is REACTIVE, that is our desire kicks in once we become aroused (physically or mentally). So if you sit around waiting to feel spontaneous desire, you may be sitting around for a long time… So if your partner is understanding and patient, ‘fooling around’ with no end goal (sex) as the target may ignite your desire.

That said, you have been through a LOT – and the pain or discomfort you are left with will of course impact on your desire….the disengagement you describe may have something to do with the disengagement you had to take on to get through the treatments that are violating for many women. In order to be sexually responsive your head needs to be connected to your body and sensations – this is the OPPOSITE of what you needed to do when going through treatment! Using a good lube may help with some of the discomfort as radiation dries out the tissues and you may need some local estrogen as well.

Seeing a sexuality counselor who knows about cancer might be a good idea as well as seeing a GYN who knows about the treatment you have had.

You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!

—

More about the Awkward Auntie program:

Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment.  She will be answering any and all questions that you send to AwkwardAuntie@lacunaloft.org or that you submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age and what kind of cancer and treatment you had.

YOU CAN ASK HER ANYTHING…. Don’t hold back!  Your questions will be answered periodically and posted on our Awkward Auntie page.