I was diagnosed in December 2017 with stage 1 Mucinous ovarian cancer. I had a radical hysterectomy and was told that I did not need chemo.
Because I'm adopted and don't know anything about my natural family's medical background I asked for the BRCA gene test, but was told that because it was mucinous, I didn't need the test.
My CA125 test has always been under 12, even with a 2kg tumour. When I go for my check ups, they always tell me that it's good that my CA125 is still low, even though I remind them that it's always been low. I believe that there's a blood marker for bowel cancer that is sometimes given to mucinous oc patients, but again, when I mentioned it, I was told that I didn't need it.
I feel fobbed off and as though I'm being a hypochondriac.
At the same time as I was diagnosed, my (adoptive) Mum was in the final stages of ovarian cancer - she was clear for 5 years, then had a recurrence. Three months after my own diagnosis she passed away, and I miss her dreadfully.
I've coped and been positive about things all this time, but my issue now is that I have been experiencing pain at the top of my right breast for about 2 months now. I can't feel a lump, and the pain is like a muscular pain, but is there even when I'm not moving. I'm worried about mentioning this to either my gp or my oncologist (I have my 3 month appointment next Wednesday). I don't know if I'm over reacting and am worried about looking stupid in front of the oncologist, when my previous worries and questions have been swept aside.
Sorry for the long post, I feel very alone and scared right now.
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Humbug12
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Hi,Im sorry to hear about yr adoptive mum, thats had to have been so hard. Have you asked for a second opinion regarding the BRAC test and bowel cancer marker test? id definitely mention the breast pain, dont worry about looking stupid, this is yr life, your body and you deserve the best. I hope you get the support you deserve. Big hug, Kathy xx
I too was 1c mucinous and was also told my type of cancer didn’t need testing for the BRACA gene.
I certainly would mention the pain in your breast, we always tend to think every pain is it’s return, best to be safe not sorry. Never worry about looking stupid, it’s your body and although the CA125 ,is a good indicator for me, it isn’t for everyone.
I don’t have a Mum or Dad anymore, no brothers, sisters, just 2 very good friends that I talk to.
I have a husband and 2 kids that I don’t burden ( I think they are bored with it all by now),as I have been cancer free for over 4 years now. In their heads I am better and over it.
All of us ladies know mentally we are never over it, we have lost so many lovely ladies on here recently and I think the site is a sadder place for it. It really bothered me about a month ago and I was determined to leave, but, if I can be of some use occasionally, have decided to pop up.
You have everything in your favour, treated early, my advice would be mention the pain, probably nothing, but if you don’t find out you will continually worry.
Then, when you get the good news, get on with your life, I am so busy I have no time to be ill or worry.
I am also very sorry about the passing of your mother and the fears for your own health and well-being that you are left with.
I hope you have some other support? Perhaps a companion, partner, sibling or friend to accompany you to your appointments?
It helps to have an advocate or just someone to listen to both you and your doctor - and to share your feelings with.
Do ask about this pain you are experiencing and ask about the bowel cancer test screening as well as BRCA testing.
It infuriates me that this test is not given to all women who are either adopted, have OC and Breast Cancer in their family, or are of Easter European Jewish ancestry.
Ladies with mucinous oc do not have the BRCA mutation so no need for testing of this. Please be aware that mucinous if different in a lot of ways to your type.
I was not thinking about her present cancer, but with all women of adoptive families, who cannot know their history, a simple blood test could prevent high or low grade Serous Carcinoma...
I was diagnosed with mucinous oc stage 1C grade 1 (ie slow growing)
Do you know if it is stage 1a, 1b, or 1c. It does make a difference as far as the treatment guidelines by NICE.
From 1c and above then adjuvant treatment is advised. If it was 1a then no more treatment is needed. Sometimes it is found that mucinous had started in the bowel so they sometimes do a colonoscopy to be sure.
Did you get a copy of your histology report? If not I would advise you to do so. Then you can really see what has gone on.
These days doctors seem very reluctant to do monitoring tests especially if it was stage 1a.
Although I was 1c I insisted on the most appropriate tests for mucinous which are the CEA and CA19-9. These are usually used in bowel cancer but are the ones that should be used in mucinous. I also have the CA125 but mine was never above normal range.
You do NOT need to be tested for BRCA as it does not apply to mucinous. At least this need not be a worry for you.
With the passing of your Mum it must feel lonely for you but there are lots of ladies on hear you can chat to or ask questions.
It is worth asking about the 2 tests I mentioned. Even if your oncologist won’t order them ( they usually monitor for 2 years) then maybe your GP might.
The CEA test shows a result in 90% of cases where there is a recurrence- so a pretty good but not an absolute indicator.
Also it is worth asking if they did a wash when they did your op. They look for stray cancer cells in it. They did not do it after my op and that is one of the main reasons I chose adjuvant treatment.
It's horrible being fobbed off....I'm 1c mucinous and have a battle over the blood tests every time. My onc prefers to do none at all. I've insisted on the CA 125 so I get that but not the CEA or CA19-9.
Try not to think of yourself as a hypochondriac, but as someone who is paying for a service just as you pay for broadband, so you expect a degree of co-operation. (I don't know where you are but we all pay one way or another).
The pain could be a pulled muscle, although 2 months is a long time for something you don't remember doing. Definitely tell them next week or your GP beforehand. Are you due a mammogram? maybe they could order one to put your mind at rest.
Hi. Some great advice above, e. g. from Fay. I'd add one thing: You'll want to have faith in your oncologist, even knowing there is very little certainty in this OC business.
Maybe you can ask for a second opinion somewhere else, including those additional marker tests, if you feel misaligned with your onc? Or maybe you can have those markers tracked via your GP (mine had offered to track ca125, if the hospital wouldn't do it)? That said, I guess the interpretation should still be left to an oncologist... so back to the second opinion maybe...
I'm skrry to hear you are feeling so scared, we all feel the same as everything we experience is new. You do need to tell everything that cause you pain or discomfort to your doctors, so they can check if everything is ok. If you think something needs to be done then is better to talk about and explain your concerns to your doctor for them to offer you more tests or talk you through until make you feel at ease.
I have experienced breast pain after my radical hysterectomy, I also did not received chemotherapy, I was sent for mammogram and ultrasound of my breasts to check why the pain was bothering me and nothing was found. I have now to go every year for mammogram test. I've heard from other patients at Maggie's and Macmillan meetings that many patients experienced the breast pain, apparently it happens due to the hormonal changes caused by the hysterectomy. I wish you can resolve your queries with your doctots soon and by doing so you can relax and feel secure. I'm sending you a big hug 🤗.
There are walk in breast screening clinics around in the UK, mainly private and don’t require a GP referral, but you pay for the tests/consultation if you want a quick fuss free check, an ultrasound and mammogram would put your mind at rest. My breast cancer caused no breast pain, apart from an aching armpit as it was affecting the nodes, but a benign cyst on the non affected breast was painful. My mum had OC and I have tested BRCA negative. I’m very sorry to hear about your mum and your diagnosis. You could do without the extra worries and being fobbed off. Best wishes x
Sorry you feel so alone. Do feel free to post on here whenever you want to. You will find a lot of support. You have the right to be listened to so mention the breast pain and ask what might be causing it. Good luck with it all
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