Wakeup Call or Hiccup?

Tuesday 2nd May, 2016

I used to start the day with saying I am blessed truly blessed and firmly believed this. But sometimes life and other things get in the way and we forget to smell the roses or stop to pick the daisies so to speak. I still do believe I am blessed and a recent trip to my gynaecologist has prompted me to affirm this each and every morning upon waking and put those positive thoughts out to the Universe.

Why is it that we get blasé about our health and wellbeing? We seem to cruise along with our busy lives and put things on the back burner. As someone who has battled cancer in the past (bowel cancer primary, secondary in my ovaries and a couple of lymph nodes in December 2001) I should be more aware and diligent in respect to my health. I put off mammograms despite several reminders and after a bad first experience realise they are not painful nowadays just a slight discomfort. During a regular pap smear in 2010 I was advised to start using “Vagifem” but no explanation as to the importance of using it forever and I assumed because I had been through menopause.  That Pap smear showed I had some abnormal cells and after a biopsy of the abnormal cells they were identified as being pre-cancer cells. In addition the gynaecologist suggested that the radiation I received in 2001 as part of my bowel cancer protocol had caused changes within my pelvic area. As a result I was to have regular pap smears and monitoring by my gynaecologist, however when I moved house in July 2014 I neglected to notify her of my new address. Fortunately as I was overdue for a review and Pap smear they contacted me.

On Tuesday my gynaecologist was examining me and had completed the Pap smear and we were having an interesting discussion about my adventures since my last visit, my upcoming adventures. She had just asked if I had any views on the correlation between the Swedish Model in respect to the Sex Industry and the high incidence of Domestic Violence in Sweden. Before I had a chance to respond I felt a distinct unpleasant stinging within my vagina and conversation was ceased monetarily whilst I asked what she was doing. She explained she was just examining me internally and externally with a vinegar type solution for changes in the cells in the vulva area and within my vagina and cervix using a colopscopy. Conversation was certainly halted when she asked me to look at the screen to my right side. She was pointing to a white area of abnormal cells which could be cancer or pre-cancerous cells. Only option is to undergo a biopsy to remove the suspect area for further examination. She said it could be done in her surgery and would take 30 minutes for the procedure. Unfortunately she didn’t have time today but I was to speak to her receptionist who would make an appointment for me.

To say I felt numb, scared and shattered would be an understatement. It is difficult enough the first time to suspect you have cancer and go through the tests. The second time is overwhelming and your mind ceases to engage as you know what to expect however it is important to stay positive. It was my mind that got me through bowel cancer despite being told I was dying and spending 7 weeks in Palliative Care halfway through my treatment.

Even though my positive self and mind are saying don’t panic it will be nothing, I am terrified and have become more so in the days following. I spoke to the receptionist who initially made me an appointment for the 14th June, ironic that date would have been my wedding anniversary. I said I can’t wait that long with my previous history. She then looked and made the appointment for the 31st of May.

I headed out of the surgery in a numb shocked state and immediately rang my friend Jill. We talked and she tried to reassure me that all will be well. Whilst talking I came to the conclusion that my Gynaecologist  wouldn’t have wanted me to wait almost four weeks for the biopsy and I returned to the waiting room informing the receptionist that I wanted to talk to the Doctor. She agreed saying that the Doctor wouldn’t have wanted the biopsy unless she was concerned with what she discovered when she examined me. When I spoke to the Doctor a short time later she said we could do the procedure in Hospital the following Wednesday. I was offered the choice of local anaesthetic or general anaesthetic. She suggested general as unlike having the procedure in her surgery a theatre in a hospital can be intimidating and scary.

The next week went quickly enough as I tried not to focus on the upcoming biopsy. I had the biopsy and had to wait a week for the results which was difficult. The good news is that once again the suspect cells turned out to be pre-cancer and I need to be monitored six monthly for a while. Once again a reminder of the problems caused by pelvic radiation and that I must use the Vegifem not only when I am sexually active or going to be sexually active. Lesson learnt from this experience is don’t take your health for granted and think you are bullet proof and be a little assertive and not feel intimated when confronted with the possibility of a serious medical condition.

Now must have that mammogram I have been putting off.

Beverly

Impact of Radiation Therapy on Sexual Health and Intimacy – a personal account.

IMPACT OF RADIATION THERAPY ON SEXUAL HEALTH AND INTIMACY – a personal account.

This is going to be a very personal blog perhaps a little too personal for some people, however it is important for a number of reasons. Firstly if my blog helps just one woman and stops her from having to endure the pain, anxiety, embarrassment and perhaps surgery as a direct result from having pelvic radiation I will be happy. I am not suggesting I wouldn’t have had radiation as it saved my life, what I am saying is that I would have been prepared and taken steps to avoid the health issues that occurred. I would like to see frank, open honest discussion on the importance for Doctors to adequately discuss the effects or potential effects that radiation can have on a person’s sexual health. This would result in patients being able to make informed decisions.

When I was diagnosed with bowel cancer in December 2001 the emphasis and urgency was on saving my life. The diagnosis confirmed by a colonoscopy on a Friday with surgery the following day allowed no time for a second opinion or an in-depth consultation to discuss my options.  I was shell shocked and being single I didn’t have a partner who could ask the questions that I was too overwhelmed to consider or think about.  I underwent extensive surgery to remove the primary cancer from my bowel and the removal of both ovaries and a couple of lymph nodes that were secondary cancer.  I needed 6 weeks to recuperate from the surgery before I had my initial consultation prior to commencing chemotherapy.

Imagine entering the Oncologist office alone and being greeted with the following “Miss Clarke it is highly unlikely you are going to survive”. No preliminary discussion, no softening just bluntness. I meekly asked “what do you mean”. He replied “didn’t anyone tell you that when they removed your tumour it broke and fell back into the pelvic cavity and there is no way they would have been able to remove all of the cancer cells”. I replied “no”. A normal person would have given up then and there with that news but that is not in my nature. Whatever we discussed after that is a blur. I do know we discussed the need for me to visit a gynaecologist as I left with a referral in my hand. The consultation with the gynaecologist was essential as apparently I was going to go through surgical menopause as my ovaries had been removed. Plus we discussed that I would need to have an infusion port implanted under the skin in my chest prior to starting chemotherapy. My chemotherapy regime was to be one week of chemotherapy every month for six months with 30 days of radiation commencing with the third chemotherapy cycle.  At no time did the Oncologist discuss the impact radiation would have on my body in particular my pelvic region and sexual health. He wasn’t aware that I had been celibate for a number of years only aware that I was currently single. Due to his bluntness and professional detachment I was just a patient so don’t think he would even consider that I was a sexual being.

My appointment with the Gynaecologist only discussed the need to go onto hormone replacement therapy. I commenced taking the medication at the same time as I commenced chemotherapy. I was advised to cease taking it after I was hospitalised with complications from the first round of chemotherapy and haven’t taken any since.

I had a consultation with the Head of Radiation Oncology prior to commencing my cycle of radiation. He was friendly and discussed in general terms radiation but nothing to do with how it would impact on my body. All I can remember is being told it would last about 5 minutes and that on my first session I would have a couple of crosses tattooed onto my backside so the radiation would be directed onto the same spot each time. To be fair the staff in Radiation Oncology and the Doctors were amazing, very supportive and caring and it is thanks to them in particular Dr Joseph that I am alive today.

Chemotherapy had knocked me around badly and with each cycle I had been hospitalised due to complications and I thought radiation couldn’t be as bad as that. However radiation was horrific as it progressively burns you, the pain is intense and you are totally exhausted. I slept for hours on end and had no energy to function outside of driving myself to and from the hospital. Halfway through my cycle I had to go into Palliative care and radiation and chemotherapy were suspended for several months. At all times the medical staff didn’t think that I would survive initially because my cancer was so advanced with secondaries from the beginning, the mistakes that were made that impacted on my survival probability and particularly when I spent 7 weeks in palliative care as I had abscesses on my bowel. However they didn’t realise my strength of character and fighting spirit and that I would do anything and endure anything to survive.  Therefore I don’t think my sexual health now or in the future was part of my treatment plan.

Despite studies showing that the effects on women of radiation to the pelvic region are extensive no-one bothered to discuss this with me and I didn’t even consider that I was at risk. I have subsequently been told that the effects will continue for the rest of my life. Unfortunately for me I didn’t become aware of or informed of the harmful effects of radiation until I was in the emergency department of Joondalup Hospital with a large tear in my vagina wall.

After I got divorced I spent the next 13.5 years celibate whilst I raised my sons. I was initially concerned when I started a relationship that my body may not function as it had previously because I had been through early menopause as a result of having my ovaries removed. However I didn’t have any problems in the four and a half years that I was in that relationship. The only issue I had was an abnormal pap smear and as the tissue within my vagina wasn’t pink and healthy looking my Gynaecologist said I needed to use Vagifem daily for a month and come back for more extensive testing.  She used a Colposcopy  http://www.nwwomens.com/colopscopy-abnormal-pap-test-houston.html to look inside my vagina and took a biopsy from an area where the cells looked suspect. The biopsy showed pre cancer cells and I was told I would need to be monitored annually. She indicated that she thought the radiation was responsible for the abnormal Pap smear and that it had caused some damage to my pelvic area.  She suggested I continue to use the Vagifem but didn’t say it was essential for me to use it biweekly for the rest of my life. Due to the possible side effects of Vagifem and the risk of developing breast and uterine cancer from Estrogens I didn’t use it regularly.

After my relationship finished I wasn’t sexually active for a few months. The first time I was sexually active my partner had just penetrated my vagina and I was fully aroused, he wasn’t overly big when I felt a sharp pain in the left side of my vagina and blood was pouring out of me. At the emergency department I had to answer a lot of embarrassing questions as to whether we were engaging in rough sex, what had been inserted inside of me and so on.  Meanwhile I was haemorrhaging badly and was exceptionally embarrassed by their questions, as was my partner. They finally understood that because I had radiation in the past and the weakness and problem was obviously associated with that. I ended up having emergency surgery to repair the large tear and I was informed that the lining on the left side of my vagina was exceptionally thin and prone to tearing. It was to happen again a couple of months later when we attempted to have intercourse. Fortunately I didn’t tear as much as the first time as I was unable to have surgery as the tissue was too fragile to be stitched, The only option was to lie flat for a couple of days to see if the bleeding would stop by itself.

After this I decided I needed to become educated in respect to the effect radiation had on my body and what I needed to do to ensure this never happened again. It took a good year for my body to repair as even an internal ultra sound would cause a small tear in my vagina. The prognosis from the Gynaecology Department that I may be unable to have penetrative sex again without the risk of tearing or tearing. Not the news any woman wants to hear or contemplate.

Radiation to the pelvic region in women can affect their fertility due to the impact of radiation on their ovaries. Periods can become irregular or cease for a period of time and in some cases will cease forever. If the  patient receives a small dose of radiation, periods will normally return to normal after a period of time.  Where a woman receives a large dose of radiation her body will immediately go through a state of Menopause and she will be confronted with the normal symptoms of menopause. It is difficult enough dealing with the effects of radiation and/or chemotherapy without the added complication of Menopause.

Tissue in the area that is receiving radiation therapy becomes pink, swollen and will appear sunburnt and after several days of radiation you will experience intense pain. This will cause the vagina to feel tender and this tenderness can last for several weeks. You will often end up with scar tissue, the walls of the vagina may become fibrous and tough and sometimes the lining of the vagina may become thin and fragile. Another side effect is the walls often may not stretch as much they previously did during sexual activity. This doesn’t always occur immediately and the affects of radiation may not become evident until several years later and is often a total surprise to the woman.

The scarring will often cause the vagina to either narrow, become shorter or both. This can be prevented by either having sex several times a week (which is normally impossible during the period of radiation and recovering from) or using a vaginal dilator on a regular basis. A rare side effect is ulcers or open sores within the vagina that take several weeks to heal after radiation ceases. Having regular sex is not an option to a number of woman who are not in relationships or have no interest in having sex. Even women who are no longer sexually active or have no interest in being sexually active need to be able to be examined internally by their gynaecologists or medical practitioners. When the opening to the vagina becomes so damaged by scar tissue or the opening so narrow that a speculum can not be inserted it will be impossible to have an internal examination.

A friend of mine who went through radiation of her pelvis as part of her colon/rectal cancer regime was told briefly that it was possible she would experience some problems with her vagina. She was given a hard plastic vaginal dilator and advised to use it after her radiation treatment was completed. No instruction as to how often or for how long she was to use it was discussed and certainly no alternatives were offered. If you are going to give women a vaginal dilator at least give them one that is not so clinical (this one was hard plastic that broke into two pieces) and one that they would want to use such as a soft silicon one.  Vaginal dilators need to be graduated in diameter so that progressive stretching can occur as not one fit suits every woman’s body.  Unfortunately for her she is unable to have penetrative sex without experiencing excruciating pain if at all as the entrance to her vagina can not stretch. This woman had four children by natural births, so had no issue prior to radiation therapy.

Each person’s regime of radiation therapy even for the same type of cancer is targeted to a different area of the pelvic region and the short term and long term effects on their sexual organs will be unique to the individual. Notwithstanding this certain factors will be similar i.e. decrease in length, decrease in width of the vagina, scar tissue to the entrance or internally, weakening and thinning of the walls of the vagina or loss of sensation. Some women may have one or more of these side effects and the lucky ones none.

Studies show that up to 50% of survivors of breast cancer and cancers that affect the pelvic region such as colon, cervical, bladder, ovarian will develop long term sexual problems. Interestingly it is the treatment not the cancer which causes the problems. In such cases it is essential that women seek help from a specialist health care provider when they become aware of the problem and for those in relationships to have an understanding partner.  You and your partner need to take it slow and concentrate on enjoying the moment and proceed with small steps, rather than focusing on the desired outcome.

So what is the solution to this problem? An initial consultation with a health care professional who specialises in sexual health in respect to radiation therapy prior to commencement of radiation treatment and regular follow up appointments would be a start.

Note: this article has been written from my own experience in respect to radiation therapy, advice from my gynaecologists and other medical practitioners and my own independent research. It is up to the individual to seek independent medical advice from their own health professionals. The intention of the blog was to make women aware of the problems that may occur and how to cope with the changes.

Regards Beverly